Friends (and especially, people from KANSAS, VERMONT, MAINE ad FLORIDA):
I find that direct, no-cost, 1-800 TELEPHONE CALLS TO WASHINGTON are
powerful tools for PWP's (people with Parkinson's) to try. I am a 46, and
in my 9th PD year, and have been blessed with a good set of vocal cords!
Today I spoke with health aides to Sens. Kassenbaum (Kansas)and
Jeffords(Vermont), and Rep. Foley(Palm Beach, Florida). Using
1-800-962-3524, the Capitol switchboard is really fast and easy.
Sen. Kassenbaum objects to "new disease-specific funding." She
believes that Senators should not vote to fund line-item monies for Parkinson's
and that the NIH directors can decide how to allocate monies to diseases.
This was expected, but it is still painful to hear this.
The most persuasive points I made, I think, are:
1] Spending $100,000,000.00 annually to cut into the estimated
$25,000,000,000.00 which Parkinson's now costs the United States;
2] I am in state of CRISIS. I personally get such severe
wearing-off paralysis and foot cramps and toe curls and pain that every day
is an ordeal to plan for. Parlodel, even nibbles, Permax, eve nibbles, hit
me so hard I am spastic, sleepy and hot. Eldepryl, while helping, and
Sinemet, both seem to put me through on-off rolercoastering. And I really
don't want to think about drill-holes in my skull and brain surgery--but do
I have any choice if the Udall bill withers on the vine??????
Sen. Jeffords' aide believes that the Parkinsonian community,
unlike any other, has rallied so strongly, that he is in an excellent
position, as a Republican sponsor, to negotiate with Sen. Kassenbaum to
accept the Udall bill as an amendment to the NIH ReAuthorization Act.
Apparently, Vermonters with Parkinsons have been very influential in making
him support us.
Rep. Foley's position I would characerize as leaning STRONGLY
towards co-sponsorship. His aide said that she did not know that Sen. Cohen
held hearings last year on Parkinson's, in the Aging Committee.
His aide said that she believed he woulod co-sponsor as soon as
hearings were held. SO, I urged her to ask him to sign on to the Udall bill
earlier than he apparently had planned to do.
I am certain that calls from PWP's are the most powerful of all.
Any of you who are well enough to talk on the phone for a few minutes should
pick out the Senators and Representatives who represent the districts of you
or your famiy members, dial 1-800-962-3524, and with as much passion as you
can muster, ask for CO-SPONSORSHIP of the UDALL BILL.
The phone calls really DO make a difference.
Thanks for reading this long message,
Ivan Suzman, 46, PD 9, Portland, Maine*
*where the orange day-lilies are blooming and the 58-degree nights are
soothing
